... in my brain actually. My very own brain tumour

Saturday, May 31, 2008

Very good news

Joan and I received wonderful news yesterday. We have been presented with our third Grandchild by our youngest son, Michael and his wife, Gill.We are so happy and excited. Little Chloe was born by Caesarian Section yesterday at 15:39 at the Kingsbury Nursing Home. No problems, no complications at all. Her birth weight was 3.275Kg. She is beautuful! How about that for wonderful news. Pictures will hopefully follow

Friday, May 23, 2008

Senator Ted Kennedy and John Freislich

Well well. I see that these things have nothing to do with power or influence. We are all human and are all equally vulnerable. Ted Kennedy has just been found to have a glioblastoma tumour in his brain. This is essentially exactly what I have - except that I know my diagnosis with greater accuracy. Basically what has happened to the two of us is that a line of primitive brain cells - glioblasts - in our brains have gone out of control and are multiplying much too fast, causing space-consuming lesions that shouldn't be there at all. Eventually they will take up too much space and cause problems that will make it impossible to go on living normally. They are also demanding a blood supply to try to stay alive, but outgrowing that blood supply, resulting in cavity formation as time goes by. They are a big, big problem. Not nice at all.

I am a lucky guy because I have far better friends than Ted Kennedy. I feel surrounded by my friends. They are so special. They all just going on being themselves. We chat quietly when necessary, or joke about things if that's what we want to do. Or we just do nothing, knowing that we are there for each other. Most of us have our mountain experiences in common, and that in itself is special, simple and fulfilling. We don't nee to pretend. Who needs more money, power or fame? Come on! Not me. All of you out there are amazing. Don't change who you are. There are plenty of things that I can't do any more. Like playing the piano. That is very frustrating. I can't climb the mountain. That is a bummer! But that may come back. But I am enjoying my food - ask Joan. She knows, and has just kind of accepted that I will put on a bit of weight. She even went out and bought me a pair or braces the other day to make sure my pants stay up reliably in all situaions (!) One mustn't take unnecessary risks. . . .

For the time being life is actually pretty good. I going to do my best to enjoy it. The prognosis for the condition is not great. I know that. But so what. No one lives forever. To read about Ted Kennedys tumour, click here.

I found it interesting reading the link about his tumour because it gave me enough distance from my own to put it in better perspective.

Tuesday, May 13, 2008

Latest medical update

This morning I wasw taken by Joan to see the oncologist. I am very weak, having to be helped out of a chair, and get tired very easily. I als get motionlly upset easily. on a good day my exercise iw limited to qa walk 6to the top of the rosd and back. That's it! A lot of these symptoms are due to the large doses of sterioids I am swtill on. We have now decidee to redce the steroids wtill further (see pevious posts). This could result in more convultions so we will havw to be careful. Anyway, we no ned to get the steroids out of the way so I can get my strength back..

Wednesday, May 7, 2008

Clarifying the previous diary note.

Firstly, thanks to all of you who either emailed or phoned to commiserate with me about the shocking nursing care I received during my most recent convulsive episode at the Vincent Palloti. Yes, it was horrendous and I would have expected better from a very well known and respected hospital. But I suppose things go wrong everywhere from time to time. It has highlited to me the importance of a team approach to treating a complex disease like a brain cancer.

In my case the medical side of my treatment has been absolutely superb. My oncologist has been more than competent, empathetic, communicative and sensible. The treatment planning and radiotherapy administration has been applied humanely, punctually and competetly by lovely, friendly ladies and I have always been made to feel welcome. The neurologist has tweaked my drug dosage so that it is now poised at just the right level. But, gee, the nursing side of things have let the team down badly as described below, leaving (literally) a bad taste in the mouth. I just get the feeling that they couldn't care less. Perhaps I am doing them an injustice. If so, please forgive me.

Yesterday, out of the blue at about 11:40am I received a very brisk, official call om a lady at Vincent Pallotti who didn't identify herself or give me her designation. All she said was that she had read my blog and was phoning to get more information as she wanted to do an investigation. After I established that she was a Quality process manager and got her name, I started submitting to some questions, but it became clear that I was going to become upset because of the interviewing style being used which was very direct and assertive. Anyway, following up this sort of issue is better than nothing, so, I have no basic complaint about the assertive initiation of the interview.

During the course of the interview I became rather emotionally labile (rememering that I am going through treatment for a brain cancer, and we agreed that she would phone back at a more aconvenient time.)

Thank you. I will be as cooperative as possible and try to help. I suppose it is dificult to get nursing staff to feel empahy for patients, but that is what is needed. Please forgivew the poor typing.